Advocacy helps and heals cancer patients, caregivers

Friday

Oct 11, 2013 at 12:01 AMOct 11, 2013 at 11:13 AM

Involvement in advocacy, says Deborah Cornwall, is one of the most powerful and effective ways for caregivers to return to what they perceive as a fulfilling and productive existence. Advocacy can be as simple as joining an email list or as involved as establishing a foundation and promoting a cause.

Mary Jane Hanron

Deborah Cornwall describes advocacy in the simplest of terms – making oneself heard.

According to the Marshfield resident, author and cancer survivor, it is a straightforward concept with infinite power and possibilities.

Since the release a year ago of her book “Things I Wish I’d Known”, which addressed needs, thoughts, and experiences of cancer caregivers, she has learned how essential involvement and action can be in the healing process.

“Caregivers have special needs of their own,” said Cornwall. “They often have placed their own lives on hold during the illness of a loved one and recovering from that experience is not easy. At times the outcome has resulted in the (patient’s) death, which creates another cycle of grieving and healing and moving on.”

Just like the cancer experience itself, what works for every caregiver is different, Cornwall has observed.

Involvement in advocacy, she says, is one of the most powerful and effective ways for caregivers to return to what they perceive as a fulfilling and productive existence. Advocacy can be as simple as joining an email list or as involved as establishing a foundation and promoting a cause.

Being informed and being involved is essential to making progress in cancer research and care, Cornwall said.

Cancer Action Network

The American Cancer Society Cancer Action Network (ACS CAN) is an organization Cornwall recommends as a place for citizens to begin their advocacy journey. The non-partisan, apolitical affiliate of the ACS holds lawmakers accountable for their actions and urges them to consider real steps and legislation to assist people touched by cancer. The organization supports issues, not candidates.

As an advocate for the 9th Congressional district in Massachusetts, Cornwall’s activities have included trips to Washington and Beacon Hill to enlighten lawmakers about issues that can help cancer patients, fund cancer research and institute cancer prevention and early detection.

“There is nothing more effective than a real story from a person touched by the disease,” she said.

Conducting public outreach to offer information and awareness about events, activities and services is another duty she performs.

“Sometimes I just have a table at a local event and our presence alone is enlightening,” she said. “People learn there are places to get information and find others to talk with. In many ways it is the purest form of advocacy.”

Current issues

Presently several areas of concern remain on the radar for CAN participants.

According to Cornwall one of the most vital issues being addressed constantly is federal research funding.

“The federal government is the largest funder of basic and applied research,” she said, adding that care for present cancer patients and the study of causes, new treatments, protocols and possible cures are of great importance to the continued progress in the battle against the disease.

“If funding is decreased or discontinued it can mean we lose promising new scientists and researchers,” Cornwall said. “If they are unable to sustain a program, they go and find something else to do and potentially groundbreaking research may never happen.”

Cornwall explained some of the latest cancer research is focused on genetics and studies at the molecular level with a goal of developing more personalized treatments and ultimately cures. “Such work is extremely expensive and often takes place over decades,” she said.

Federal funds sent to Massachusetts’s institutes yearly are more than $2.5 billion, according to Cornwall. In 2012, Massachusetts received $2,470,036,857 from the National Institute for Health (NIH), which included $348,964,123 from the National Cancer Institute. The funding from the NIH supported more than 34,000 jobs in Massachusetts in 2013.

“These numbers are important to battling the disease and helping those affected by cancer but also have a significant economic impact on the region,” she said. “It is vital that our lawmakers understand this and do all that is possible to support continued funding.”

CAN workers also follow quality of life issues closely as they monitor legislation that affects areas of patient care, treatment and medication. According to Cornwall, many current laws are related to dispensation of narcotics and even more recently the legalization of medical marijuana.

“Care for discomfort and anxiety requires a great deal of attention,” she said.

A particular area of interest for many cancer advocates is the training of medical professionals in palliative care.

“Those treating cancer patients need to be learning new philosophies about anxiety and pain management and we want such programs to be funded and supported,” she said. “There is no need for discomfort and suffering at any stage in a cancer experience when it is preventable.”

The implementation of the Affordable Care Act remains a priority for advocates across the nation, according to Cornwall. Because of the law’s complexities it continues to present challenges to those supporting its implementation and much depends on outreach and increased public awareness about the program, she said.

“Once the law is fully implemented it will offer opportunities and services not always available to patients now and that will make a significant difference to those facing a cancer diagnosis.”

Local options

According to Cornwall, the most important level for advocacy action and activity is at the local level.

“Being an advocate can take many forms and all of them can be rewarding and very healing,” she said. “People need to return to the simple premise that talking to your neighbors, family and friends is one of the most effective ways to communicate. Getting active, attending events and always learning is so important.”

Cornwall encourages current and former caregivers, patients or anyone interested to consider advocacy as way to heal and a way to help. Opportunities are widespread and usually not far from one’s home.

“People should think about what is meaningful or what they are passionate about,” she said. “Do some research online or be in touch with a hospital or charitable organization. Before you know it you find a place where you belong and can make a difference.”

Though much work done by advocates is directed at lawmakers, overall awareness is vital for everyone, Cornwall believes.

“If people don’t mobilize and be active in their communities they lose their right to complain about the outcome,” she said.